From their inclusion in 16th-century paintings to their roles in famous families (including, probably, Darwin's), people with Down Syndrome are part of history.

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From their inclusion in 16th-century paintings to their roles in famous families (including, probably, Darwin's), people with Down Syndrome are part of history.

At the Down Wit Dat blog, there's a 8-part (with more on the way) feature that provides some much-needed inclusion to people who are usually just a footnote to somebody else's history. Naturally, the series delves into ideas like eugenics and the institutionalization of differently abled Americans. But, even there, the story is centered on people with Down Syndrome and, as such, it offers a perspective and information that you likely haven't heard before. Great stuff.

Here's an excerpt about the short life of Charles Waring Darwin, the youngest child of the Charles Darwin you know. Based off historical records and the surviving photograph that you can see here, historians suspect that he had Down Syndrome.

Henrietta, one of his daughters, had this to say about Charles Waring in her book "Emma Darwin, A century of family letters...":

"The poor little baby was born without its full share of intelligence. Both my father and mother were infinitely tender towards him..."

Charles Darwin himself had this to say about his youngest child:

“He was small for his age and backward in walking and talking.... He was of a remarkable sweet, placid and joyful disposition, but had not high spirits.... He often made strange grimaces and shivered, when excited.... He would lie for a long time placidly on my lap looking with a steady and pleased expression at my face... making nice little bubbling noises as I moved his chin.”

Looking at the photograph of the then 45 year old Emma and her newborn son, it is not hard to see what appears to be a "weakened" bridge to the nose and quite possibly be epicanthal folds. However, the photo is extremely grainy and we will never know for sure. Charles Waring Darwin passed away from Scarlet fever at 19 months of age, never having learned to walk or talk. Darwin Sr. recorded in his journal that day: "Poor Dear Baby Died." He was unable to attend the first reading and publication of his theory of Natural Selection due to the illness and death of his youngest son.

Denial is powerful. It can be a crucial coping tool when experiencing loss or trauma, but it also can unmoor you from reality. From the time I lost most of my left arm in February, I was living in that parallel universe, one where I’d power through, barely acknowledging the amputation—until I went for a run on the sunny afternoon of April 6.

It was nothing more than a slightly uneven sidewalk that took me down. No problem for a runner with two arms. In fact, this particular sidewalk is right behind my home, and I had negotiated it uneventfully for years. But here are two things you need to know about life after an arm amputation: First, your center of gravity changes dramatically when you are suddenly eight pounds lighter on one side of your body. Second, while my arm may be missing physically, it is there, just as it always has been, in my mind’s eye. I can feel every digit. I can even feel the watch that was always strapped to my left wrist. When I tripped, I reached reflexively to break my very real fall with my completely imaginary left hand. My fall was instead broken by my nose, and my nose was broken by my fall.

Lying on that sidewalk, moaning in pain, I reached the end of Denial River and flowed into the Sea of Doubt. It finally dawned on me in that instant that I was, indeed, handicapped. That may not be the term of choice these days—“differently abled” or “physically challenged” may be de rigueur—but as I touched my bloody face, feeling embedded chips of concrete in the wounds, “handicapped” sure seemed to fit.

The woman I was passing on the sidewalk when I fell took one look at me and cried out in panic to her husband: “My God, what’s happened to his arm?” “It’s gone,” I said. “But don’t worry, that didn’t happen today.”

http://boingboing.net/2014/06/12/lifeafter.html/feed0True cost of war visible in our overwhelmed Veterans' Administrationhttp://boingboing.net/2014/05/21/true-cost-of-war-visible-in-ou.html
http://boingboing.net/2014/05/21/true-cost-of-war-visible-in-ou.html#commentsWed, 21 May 2014 20:39:38 +0000http://boingboing.net/?p=304702Army Staff Sgt. Sam Shockley, who was injured in Afghanistan when he stepped on a buried bomb, prepares to work on his balance and on walking with prosthetic legs at Walter Reed National Military Medical Center in Bethesda.]]>

Army Staff Sgt. Sam Shockley, who was injured in Afghanistan when he stepped on a buried bomb, prepares to work on his balance and on walking with prosthetic legs at Walter Reed National Military Medical Center in Bethesda. Matt McClain/The Washington Post

From the sixth in a 6-part Washington Post series on war and disability: "The longest stretch of fighting in American history is producing disability claims at rates that surpass those of any of the country’s previous wars. Nearly half of Iraq and Afghanistan veterans are filing for these benefits when they leave the military — a flood of claims that has overwhelmed the VA and generated a backlog of 300,000 cases stuck in processing for more than 125 days. Some have languished for more than a year." The flood of claims peaked last year at 611,000. ]]>http://boingboing.net/2014/05/21/true-cost-of-war-visible-in-ou.html/feed0Rich New Yorkers hire disabled "guides" to Disney World in order to skip lines (according to NY Post, anyway)http://boingboing.net/2013/05/15/rich-new-yorkers-hire-disabled.html
http://boingboing.net/2013/05/15/rich-new-yorkers-hire-disabled.html#commentsWed, 15 May 2013 14:15:02 +0000http://boingboing.net/?p=230325
The (awful and not usually very trustworthy) New York Post reports that rich New Yorkers pay thousands of dollars to an Orlando area service that rents out disabled people to accompany them to Walt Disney World in order to jump the lines.]]>
The (awful and not usually very trustworthy) New York Post reports that rich New Yorkers pay thousands of dollars to an Orlando area service that rents out disabled people to accompany them to Walt Disney World in order to jump the lines. The article says that there's a word-of-mouth underground in New York's priciest private schools, in which parents pass on the details of the service, which is allegedly called Dream Tours Florida:

Passing around the rogue guide service’s phone number recently became a shameless ritual among Manhattan’s private-school set during spring break. The service asks who referred you before they even take your call.

“It’s insider knowledge that very few have and share carefully,” said social anthropologist Dr. Wednesday Martin, who caught wind of the underground network while doing research for her upcoming book “Primates of Park Avenue.”

“Who wants a speed pass when you can use your black-market handicapped guide to circumvent the lines all together?” she said.

“So when you’re doing it, you’re affirming that you are one of the privileged insiders who has and shares this information.”

http://boingboing.net/2013/05/15/rich-new-yorkers-hire-disabled.html/feed51This American Life's report on kids and disability claims riddled with factual errorshttp://boingboing.net/2013/04/05/this-american-lifes-report-o.html
http://boingboing.net/2013/04/05/this-american-lifes-report-o.html#commentsFri, 05 Apr 2013 16:10:57 +0000http://boingboing.net/?p=223062
A couple weeks ago, I listened to Unfit for Work: The startling rise of disability in America an interesting program on the supposed rise in disability claims produced by Planet Money and aired on This American Life (where I heard it).]]>
A couple weeks ago, I listened to Unfit for Work: The startling rise of disability in America an interesting program on the supposed rise in disability claims produced by Planet Money and aired on This American Life (where I heard it). The program raised some interesting points about the inaccessibility of certain kinds of less-physical jobs to large numbers of people, but it also aired a lot of supposed facts about the way that parents and teachers conspired to create and perpetuate disability classifications for kids.

Government Accountability Office: "Examiners Rely On A Combination Of Key Medical And Nonmedical Information Sources." A Government Accountability Office report found that disability determination services (DDS) examiners determined a child's medical eligibility for benefits based on a combination of school records and medical records, and that if medical records in particular were not available, they were able to order consultative exams to review medical evidence:

DDS examiners rely on a combination of key medical and nonmedical information sources -- such as medical records, effects of prescribed medications, school records, and teacher and parent assessments -- in determining a child's medical eligibility for benefits. Several DDS officials we interviewed said that when making a determination, they consider the totality of information related to the child's impairments, rather than one piece of information in isolation. Based on our case file review, we estimate that examiners generally cited four to five information sources as support for their decisions in fiscal year 2010 for the three most prevalent mental impairments.

[...]

If such evidence is not available or is inconclusive, DDS examiners may purchase a consultative exam to provide additional medical evidence and help them establish the severity of a child's impairment. [Government Accountability Office, 6/26/12]

The Media Matters report cites high-quality sources like the GAO throughout, and makes an excellent case for a general retraction of this report by NPR. I hope that they, and Glass, will reconsider their endorsement of this report.

Download the hour-long documentary for $5. I watched it last night, and I strongly recommend. It's not "political," in the sense that it's not advocating a particular party or candidate; it's more about the culture of news and the surreality of what it's like to be at a convention. I've been inside that beast, and this is the most accurate capture of that weird world I've seen. Also, if you work in TV news? There are some scenes in this film that will prove to you, without any doubt, that politicians tend to spew prepared talking points as answers to questions, even when the questions are unintelligible non-word vocalizations.

Above, a trailer. Below, an exclusive clip, and a Boing Boing Q&A with director Arthur Bradford, and Matt Stone ( South Park, Book of Mormon), who backed the project and is a big fan.

Matt Stone and Trey Parker have been involved with Arthur Bradford and "How's Your News" for 15 years. Matt tells Boing Boing, "It is a great relationship and a totally cool thing." Arthur also directed "The Making of South Park: 6 Days to Air," and received an Emmy nomination for that documentary.

Boing Boing/XJ:Matt, I know you're a big news junkie, what do you get out of watching this that you don't out of, say, reading the New York Times or watching CNN's coverage of the political conventions?

Matt Stone: Even to a news junkie like me, the current incarnation of the political conventions are pretty absurd. The regular news dutifully tries to distill the psychodrama and bullshit into a horserace of political power. How's Your News always puts a smile on my face because they so effortlessly resist that narrative. I need more How's Your News in my life. I am a huge fan.

Boing Boing/XJ:Arthur, my question to you, why are you doing this project?

Arthur Bradford: I've been making these How's Your News films for over fifteen years now. It really just just started as a lark at this summer camp I was working at. We wanted to make videos which we could show after dinner at the camp and have people laugh. When Matt and Trey got in touch way back in 1996, before they became famous, I thought it was both great and weird that people I didn't know enjoyed these videos. Over time we became friends and if it weren't for their encouragement, and later, financial help, this whole project would not exist. I like making these films because I think they are pure - we have the same motivations we did back at the summer camp, just wanting to make people smile and surprise them. I know of no less pretentious people than the reporters from How's Your News? I have learned so much from watching them approach and converse with the various public figures they meet. I honestly believe you can learn quite a lot about a person by watching the way he or she interacts with a person with a disability. In that sense I have found that the conversations which take place before our cameras are often more revealing than the supposedly hard hitting interviews we see on major networks. What I particularly like about this latest film is the chance to watch the way political figures, and the many handlers surrounding them, work so hard to manipulate the way they are portrayed in the media. Often the most interesting part of the interview for us is not the actual interview at all. It's the slightly uncomfortable negotiation which takes place beforehand as we ask them if they will speak with us. I liked being able to include those discussions in this new film. In the past we didn't have the freedom, or good sense, to do that.

Arthur Bradford: Over the years we have endeavored to produce How's Your News in many different ways, as a film festival entry, a DVD, an HBO documentary, and even an MTV series. This latest version, a completely independent, pay-per-view online stream/download, is truly the best form of distribution yet. For those of you who feel frustrated by commercial news media, I really urge you to support this kind of thing. Not to get on a high horse, but hey, this is It's the future of independent media. It's a very good thing.

Boing Boing/XJ:What's it like working with the correspondents?

Arthur Bradford: I've known all of them for so long now, they are some of my oldest friendships. And I do mean friendships. I first met Jeremy when he was just a kid, seven or eight years old. He was a crazy little ball of energy and we all wondered what he was going to be like when he grew up. Would people still think he was cute and charming? He's grown up now and, well, you can decide. Sue calls me up at least once a week, usually more. She is relentless when she's got something on her mind. This latest "How's Your News?" project came about in part because of her prodding. She was leaving messages on my phone saying, "Is this How's Your News horse dead or what? Come on!" Bobby is like an uncle to me. He was an usher at my wedding and plays with my children. I honestly don't know of anyone who can so easily mix and mingle with such a wide array of people. You could take him to a Hell's Angles rally in the morning and he'd have everyone hugging him and then attend a formal White House luncheon an hour later and he'd be cozying up the the Secretary of State. He'd know just how to behave immediately. It's a skill few of us have.

I hold our reporters to a high standard. I often feel like I'm the coach and they are my team. I have to assess who is feeling good and who will interact in the most interesting way with a given interviewee. I sometimes get frustrated with the reporters if they ask banal questions or act shy. I let them know it when I think they can do better. But I never feed them questions. That doesn't come off well. The questions need to come from them. If they are not having a good time and showing genuine curiosity then it's not enjoyable to watch. I find directing How's Your News to be exhausting and draining and usually after each one is done I swear I'll never do it again. But then Sue and Jeremy starting calling me up and we end up hitting the road. And in the end I'm glad we do it.

http://boingboing.net/2012/10/18/hows-your-news-election-201.html/feed6Deaf man writes that TSA agent mocked him as “F*cking deafie,” then stole his candy, ate ithttp://boingboing.net/2012/07/09/tsa-mocks-deaf-man-as-fcki.html
http://boingboing.net/2012/07/09/tsa-mocks-deaf-man-as-fcki.html#commentsTue, 10 Jul 2012 01:49:11 +0000http://boingboing.net/?p=170225Update (June 12): The young author of the post alleging mistreatment by the TSA contacted Boing Boing to request that we delete/unpublish this blog post, explaining that he hadn't intended the story to "go viral." He then took down his account from his Tumblr (which, before this widely re-posted item, appears to have been a small personal blog read by a small number of real-world friends).]]>Update (June 12): The young author of the post alleging mistreatment by the TSA contacted Boing Boing to request that we delete/unpublish this blog post, explaining that he hadn't intended the story to "go viral." He then took down his account from his Tumblr (which, before this widely re-posted item, appears to have been a small personal blog read by a small number of real-world friends). Today, the TSA also published this post at the official TSA blog. Snip: "A close examination of the video during this timeframe indicates that officers working the checkpoint were professional and appropriate with all passengers." The author of the original Tumblr post told Boing Boing he wants privacy.

teaandtheatre, who is deaf, writes about an upsetting incident of "ableist" or "audist" harassment he claims to have received from the TSA, while going through a screening at the Louisville, Kentucky airport.

He explains that he was returning home from the National Association for the Deaf's biennial conference, with friends who'd attended the same event for deaf rights advocacy. He writes on Tumblr that he wrote the post as a kind of heads-up for other deaf folks, but it has gone viral outside of that community. Snip:

While I was going through the TSA, some of them started laughing in my direction. I thought it might’ve been someone behind me, but I found out otherwise.

They went through my bag (for no reason), and found a couple bags of candy I brought. I was told I wasn’t allowed to fly with that (wtf? I’ve flown with food before — these were even sealed still because I brought them right in the airport). I was then asked if I would like to donate the candy “To the USO”. Since I know the airport there has an Air National Guard base, and I figured it would go to the soldiers, I (annoyed) said sure, why not?

The guards, as I was getting scanned, started eating the candy they just told me was for the soldiers. In front of me, still laughing at me (very clearly now). One of them asked why they were laughing, and one of them came up to me, pointed at my shirt, laughed at me and said, “Fucking deafie”. The Louisville TSA called me a “fucking deafie” and laughed at me because I was deaf, and they expected wouldn’t say anything back (or wouldn’t hear them). Make no bones about it — she was facing me and I read her lips. There was no mistake. I would later find out that they had called at least 4 other individuals the same thing.

Read the rest here. I have contacted the TSA to inquire about the reported incident. In subsequent posts, the author —who says he was not expecting the story be so widely read—adds,

Does it make me angry? Sure, I made that post didn’t I? But it’s like…..a 3 or 4 out of the 10 of some of the other stuff. It’s just a day in the life of being deaf.

In other words, it's not just the TSA. Dealing with non-deaf assholes is a routine part of daily life for people who are deaf.

The Transportation Security Administration launched the “TSA Cares” program to assist disabled fliers just four months ago, but a story making the rounds today proves that the TSA definitely does not.

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The Transportation Security Administration launched the “TSA Cares” program to assist disabled fliers just four months ago, but a story making the rounds today proves that the TSA definitely does not. The Frank family was traveling from New York City's JFK airport to Florida, and were abruptly pulled aside after a dispute over how their 7-year-old daughter Dina was screened. The child is developmentally disabled and has cerebral palsy. She walks with crutches and leg braces.

With her crutches and orthotics, Dina cannot walk through metal detectors and instead is patted down by security agents. The girl, who is also developmentally disabled, is often frightened by the procedure, her father said. Marcy Frank usually asks the agents to introduce themselves to her daughter, but those on duty on Monday were exceptionally aggressive, Joshua Frank said, and he began to videotape them with his iPhone.

“And the woman started screaming at me and cursing me and threatening me,” he said.

Here's the best part! The TSA has issued a statement defending the screeners. Snip: “TSA has reviewed the incident and determined that our officers followed proper screening procedures in conducting a modified pat-down on the child.”

[Video Link] From H. Hoover at Distriction blog, a little anecdote about a cool interaction that Stephon, a young man who was "born deaf and justifiably proud," had with the president at a recent event:

Stephon stood just a few feet away from Barack Obama.

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[Video Link] From H. Hoover at Distriction blog, a little anecdote about a cool interaction that Stephon, a young man who was "born deaf and justifiably proud," had with the president at a recent event:

Stephon stood just a few feet away from Barack Obama. The president, busy shaking hands, looked right at him. “It was like he was waiting for me to say something,” he said later.

So the 26-year-old Prince George’s Community College student took his cue and spoke to President Obama in his first language: American Sign Language. “I am proud of you,” Stephon signed. The president, almost involuntary, instinctively, immediately signed back.

This has nothing to do with the neat story behind this video, but I've always wondered: is being bald and steely-eyed a requirement for Secret Service agents? I mean, is it in the job description? And if they're not already bald, do they make them shave their heads? Because it seems like every one I've seen in real life, and in this video, is a steely-eyed bald guy. Someone please get back to me on that. Thanks.

I've known of James Hathaway and the NGO he co-founded, Clear Path International, for many years. They do great work to help civilian survivors of landmine blasts, people who now have disabling injuries, live better lives through medical care, education, improved mobility and access, and other forms of support.

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I've known of James Hathaway and the NGO he co-founded, Clear Path International, for many years. They do great work to help civilian survivors of landmine blasts, people who now have disabling injuries, live better lives through medical care, education, improved mobility and access, and other forms of support. Clear Path originally focused their efforts in Vietnam, but have since expended into other conflict/post-conflict zones including Cambodia and Afghanistan.

Afghanistan, James says, is “by far our largest project,” with work ongoing in 19 of the country's 34 provinces.
James returned to Kabul to work with the CPI team there, just as the security situation abruptly escalated to a new level of crisis.

James and crew are spending a lot of time with bulletproof vests on, in safe rooms, and surrounded by very heavily armed security guys. James is blogging daily, and explains why he's there and what they're trying to accomplish in the following account, republished here in entirety with permission.

Seven years ago this month I was a guest blogger on my old friend Tom Peters’ blog. He had asked me to guest-post while I took a nearly two-month journey across southeast Asia to visit all of our existing project sites. CPI was just five years old and we had really started to hit our stride with projects having already aided, in ways both large and small, well over a thousand people in Vietnam, Cambodia and along the Thai-Burma border.

On this trip, as I re-enter Clear Path International after three years away, I have a lot to learn about what has become our biggest and most complicated project: Clear Path Afghanistan.

.

The Clear Path International office in Kabul, Afghanistan.

The CPI Kabul office, in partnership with the US Department of State’s Office of Weapons Removal and Abatement provides assistance to landmine survivors and other people with disabilities by providing physical accessibility ramps to clinics, schools, government buildings, and mosques, which are often the most important sites in communities across Afghanistan. CPI supports disability resource centers for developing vocational skills and accessing peer support and assistance from disability advocates, none of which would otherwise be available to the beneficiaries here. CPI has expanded access to physical therapy services and physical rehabilitation, too. One of the most requested kinds of project activities in this extremely deprived environment is livelihood training to promote economic reintegration of accident survivors. CPI has been supporting these as well, always with the inclusion of literacy and numeracy education as a component. We even sponsor a first-rate cricket team made up entirely of landmine survivors and young menwith other physical disabilities. They routinely play against, and beat, teams of all able-bodied competitors.

We do this with a number of Afghan partners located in 19 out of 34 provinces across the country. While I can’t name all of our projects and partners in this post, I want to highlight a few in the hopes that, as I post more, I will eventually touch on all of them.

Afghan SPARK

SPARK is an evolution of a project originally conceived in 2008 by Clear Path International, and employs disabled deminers and mine survivors to produce the equipment necessary for active deminers to carry out their essential work with increased safety.

Revenue generated from demining tool sales directly supports other victim assistance projects. SPARK products are locally available and often cost significantly less than other suppliers, which are generally sourced from outside Afghanistan.

Afghan Landmine Survivors Organization (ALSO)

CPI partners with ALSO in providing accessibility ramps, social reintegration services, and awareness raising projects for disabled persons.

Their mission statement: To promote living situation of persons with disabilities by providing peer support/psychosocial support, education, economic inclusion, and rehabilitation services.
To promote the rights and dignity of persons with disabilities by advocating the Afghan decision makers to implement the victim assistance provisions of the Mine Ban Treaty and domestic laws and policies, and to ratify and implement the UN Convention on the Rights of Persons with Disabilities and Convention on Cluster Munitions.

Afghan Disabled Vulnerable Society Cricket Team

The name is awkward, but these guys can play cricket!

From a previous post on the CPI blog:

“The team was created by CPI’s partner, Afghan Disabled Vulnerable Society (ADVS), to provide sports activities for youth with physical challenges, and to change public perceptions about the role of disabled persons in the community. Most of the players live in Jalalabad City, the bustling epicenter of the province near the Pakistan border. They are landmine survivors, young men who have contracted polio, or who’ve suffered in other ways from violence or disease related to war and the lack of medical care.

And yet they excel at competitive cricket. These men have played together for more than two years, having won several matches against teams without a single disabled player. In February, they won the overall trophy in a five-team tournament in Jalalabad. Over three days, they defeated each of the opposing teams. In September, they repeated their success against an entire board of teams without any disabled players, in northern Kunduz Province, by winning the four day tournament and taking home the overall first place trophy.”

On the trip I took seven years ago, I met with three young children injured by ordnance left over from the Vietnam war. In my post I said that I believed they would all thrive someday thanks to CPI’s good work and the generosity of our donors. I am glad to report that they have. The CPI Vietnam office sent me pictures of two of them (Ha and Nghia) now with children of their own. I was moved to tears. I am proud that, also because of CPI’s good work and the generosity of its donors, the organization itself has grown up as well.

Much like our Vietnam team did over a decade ago, Clear Path Afghanistan is staffed by a team so good that they have changed the game.

]]>http://boingboing.net/2012/02/28/inside-kabul-landmine-survivo.html/feed029-year-old woman born deaf hears herself for the first timehttp://boingboing.net/2011/09/30/29-year-old-woman-born-deaf-he.html
http://boingboing.net/2011/09/30/29-year-old-woman-born-deaf-he.html#commentsFri, 30 Sep 2011 15:26:48 +0000http://boingboing.net/?p=121146[Video Link] sloanchurman says: "I was born deaf and 8 weeks ago I received a hearing implant. This is the video of them turning it on and me hearing myself for the first time :)" (Via Sean Bonner)]]>

[Video Link] sloanchurman says: "I was born deaf and 8 weeks ago I received a hearing implant. This is the video of them turning it on and me hearing myself for the first time :)" (Via Sean Bonner)]]>

http://boingboing.net/2011/09/28/american-money-is-very-hard-on-blind-people.html/feed64Blind person uses ATM for first timehttp://boingboing.net/2011/09/13/blind-person-uses-atm-for-first-time.html
http://boingboing.net/2011/09/13/blind-person-uses-atm-for-first-time.html#commentsTue, 13 Sep 2011 18:44:05 +0000http://boingboing.net/?p=117350
This video shows the process that a blind man goes through in using a particular ATM for the first time; the machine he selects is one that has a ton of assistive features that are aimed at making use easier for visually impaired people, but it's apparent that this guy -- blind film critic Tommy Edison -- has to go through a heroic effort to get through a technological ritual that most of us take for granted.]]>

This video shows the process that a blind man goes through in using a particular ATM for the first time; the machine he selects is one that has a ton of assistive features that are aimed at making use easier for visually impaired people, but it's apparent that this guy -- blind film critic Tommy Edison -- has to go through a heroic effort to get through a technological ritual that most of us take for granted. I also felt for Edison in light of the advice to shield your PIN from potential hidden cameras, a task that seems to add transcendent difficulty to an already tricky task.

http://boingboing.net/2011/09/13/blind-person-uses-atm-for-first-time.html/feed34Hero of quadroplegic game controllers to retire, replacement neededhttp://boingboing.net/2011/06/11/hero-of-quadroplegic.html
http://boingboing.net/2011/06/11/hero-of-quadroplegic.html#commentsSat, 11 Jun 2011 06:16:31 +0000they fear there will be no one to replace Yankelevitz, who has sustained quadriplegic game controllers for 30 years almost entirely by himself.]]>they fear there will be no one to replace Yankelevitz, who has sustained quadriplegic game controllers for 30 years almost entirely by himself. The retired aerospace engineer hand makes the controllers with custom parts in his Montana workshop, offering them at a price just enough to cover parts."
]]>http://boingboing.net/2011/06/11/hero-of-quadroplegic.html/feed8Developmentally disabled man harrassed by TSA at Detroit airporthttp://boingboing.net/2011/06/09/developmentally-disa.html
http://boingboing.net/2011/06/09/developmentally-disa.html#commentsThu, 09 Jun 2011 13:39:09 +0000
"You have got to be kidding me. I honestly felt that those two agents did not know what they were doing," Mandy told us.

Dr. Mandy claimed they asked Drew to place his feet on the yellow shoe line, something he didn't understand. They proceeded to pat his pants down, questioning the padding which was his adult diapers. When the agents asked Drew to take his hand and rub the front and back of his pants so they could swab it for explosives, his dad stepped in and tried to explain that Drew was mentally challenged.

http://boingboing.net/2011/06/09/developmentally-disa.html/feed52Man chooses "elective amputation" for bionic hand, after motorcycle accidenthttp://boingboing.net/2011/05/18/man-chooses-elective.html
http://boingboing.net/2011/05/18/man-chooses-elective.html#commentsWed, 18 May 2011 12:19:32 +0000
A 26-year-old man in Austria who lost the use of his right hand in a motorcycle accident ten years ago has decided to undergo "elective amputation," after which he will be fitted with a bionic hand controlled by nerve signals from his own arm.]]>

A 26-year-old man in Austria who lost the use of his right hand in a motorcycle accident ten years ago has decided to undergo "elective amputation," after which he will be fitted with a bionic hand controlled by nerve signals from his own arm. German prosthetics company Otto Bock makes the bionic hands; BBC News reports the prosthetics can "pinch and grasp in response to signals from the brain that are picked up by two sensors placed over the skin above nerves in the forearm."

This will be the second such surgery performed by Professor Oskar Aszmann, of Vienna.

A 24-year-old Austrian man named Patrick was the first patient in the world to choose to have his hand amputated, again by Professor Aszmann, and a bionic replacement fitted. He lost the use of his left hand after being electrocuted at work.

http://boingboing.net/2011/05/18/man-chooses-elective.html/feed34US, EU want to delay copyright treaty to help blind people for 3-5 yearshttp://boingboing.net/2011/04/19/us-eu-want-to-delay.html
http://boingboing.net/2011/04/19/us-eu-want-to-delay.html#commentsTue, 19 Apr 2011 00:45:21 +0000
The combination of the soft recommendation and the monitoring and delay in action advocated by the European Commission and the USPTO is widely seen as a face saving way for the Obama Administration and the European Commission to kill the treaty, or at least to delay it so long its proponents can no longer maintain their advocacy efforts.

At this point, advocates of the treaty will be looking for help in changing the positions of the European Commission and the US government -- the two groups now blocking action on the treaty.

http://boingboing.net/2011/04/19/us-eu-want-to-delay.html/feed6Travel guide for American invalids, 1887http://boingboing.net/2011/02/23/travel-guide-for-ame.html
http://boingboing.net/2011/02/23/travel-guide-for-ame.html#commentsWed, 23 Feb 2011 12:17:44 +0000Appleton's illustrated hand-book of American winter resorts for tourists and invalids is a whirlwind tour through all the places you can go and die of consumption in the America of yesteryear:
Out west in scenic California the land and times were much, much different than today.]]>Appleton's illustrated hand-book of American winter resorts for tourists and invalids is a whirlwind tour through all the places you can go and die of consumption in the America of yesteryear:

Out west in scenic California the land and times were much, much different than today. Appleton's guide takes visitors on a botanical tour of "cacti of the most curious sort," and it also explains why I saw so many Eucalyptus trees while living there in 2000-2004: "But the people plant a little shoot of the Australian blue-gum (Eucalyptus globulus), and in two years it becomes a shade-tree 15 or 20 feet high." Fashion and comfort were obviously not commodities in the near horizon if Eucalyptus shade-providing trees were the amenities.

Be sure to head north to Santa Barbara and buy a horse for only $20 so you can tour the beaches. Cure your rheumatism at the Hot Sulphur Springs with sulphureted hydrogen, iron, aluminum, and potash. The dry air the guides associated with relief for consumptive illnesses was and is the same dry air responsible for horrendous wildfires that we see in the news every summer.

]]>http://boingboing.net/2011/02/23/travel-guide-for-ame.html/feed4Wheelchair for the developing world: cheap, rugged and easy to maintainhttp://boingboing.net/2011/02/07/wheelchair-for-the-d.html
http://boingboing.net/2011/02/07/wheelchair-for-the-d.html#commentsMon, 07 Feb 2011 06:37:42 +0000
Core77's case-study of the MIT Mobility Lab's "Leveraged Freedom Chair" is a fascinating look at the difficulties presented by designing a sustainable wheelchair for use by disabled people in the developing world. The final product can be sold for $100 -- a 90 percent reduction off traditional wheelchairs -- and uses a lever-driven propulsion system that works better over rough terrain. It uses bicycle parts to keep costs down and simplify maintenance.

]]>http://boingboing.net/2011/02/07/wheelchair-for-the-d.html/feed39Maine to legalize switchblades for one-armed peoplehttp://boingboing.net/2011/02/01/maine-to-legalize-sw.html
http://boingboing.net/2011/02/01/maine-to-legalize-sw.html#commentsTue, 01 Feb 2011 01:31:43 +0000
The Lewiston Sun-Journal reports that Rep. Sheryl Briggs has introduced LD 126, entitled "An Act to Allow a Person With One Arm to Possess Certain Kinds of Prohibited Knives." The bill would provide that Maine's "dangerous knives" law, which restricts switchblades, would not apply to the "possession or transportation of a knife . . . by an individual who has only one arm." This exception would allow single-armed Americans (male or female, of course, but probably male) the same access to folding knives that is enjoyed by the fully limbed.

According to the report, Briggs was asked to propose the legislation by a one-armed lawyer in her district, who pointed out that current law "utterly fails to accommodate" people who cannot use two hands to open a folding knife and who, I guess, have a need for that kind of knife rather than a regular one with a sheath or something for safety reasons. He also pointed out that a similar exception is already part of federal law.
Maine Bill Would Allow One-Armed Men to Use Switchblades

]]>http://boingboing.net/2011/02/01/maine-to-legalize-sw.html/feed54Where's Molly: heartbreaking reunion with developmentally disabled sister institutionalized 47 years agohttp://boingboing.net/2010/11/29/wheres-molly-heartbr.html
http://boingboing.net/2010/11/29/wheres-molly-heartbr.html#commentsSun, 28 Nov 2010 18:34:10 +0000
And at first, Molly's father visited often, until Fairview's staff advised him to stop, because Molly would become inconsolable after he left.

But Jack Daly found an ingenious way to continue seeing his daughter . . .

"He did go back," said Jeff. "It was only a way that I suppose my dad could have figured out. He went back as a clown."

Jeff's father - an executive at the Bumblbee Seafood Company - founded a troupe called the Astoria Clowns in 1957, the very year Molly was sent away. The troupe traveled around Oregon, marching in parades and entertaining children wherever they went.

And they visited Fairview.

"He was able to have this relationship with Molly in disguise: Painted face, an orange wig, wearing the clown outfit," said Jeff. "But he was able to still get back there and see his daughter."

By profession, Jeff was a freelance cameraman who sometimes worked for CBS News. Now, he's made a film called "Where's Molly" about the search for his sister. He hopes his story encourages others to reunite with siblings lost because of the wisdom of earlier times.
Where's Molly?
(Thanks, Steve, via Submitterator!)

]]>http://boingboing.net/2010/11/29/wheres-molly-heartbr.html/feed23Raising money for paralyzed graffiti artist and open eye-tracker pioneer TEMPT1http://boingboing.net/2010/09/10/raising-money-for-pa.html
http://boingboing.net/2010/09/10/raising-money-for-pa.html#commentsFri, 10 Sep 2010 03:00:59 +0000
Here's a Kickstarter project from the EyeWriter team -- EyeWriter being a set of free/open libraries and hardware for doing eye-tracking for input and robotic control.]]>

Here's a Kickstarter project from the EyeWriter team -- EyeWriter being a set of free/open libraries and hardware for doing eye-tracking for input and robotic control. EyeWriter has its inception with TEMPT1, a famous Los Angeles graffiti artist who was paralyzed by ALS (Lou Gehrig's disease) but who has been able to go on working thanks to the EyeWriter tools.

Now TEMPT1 and the EyeWriter folks are raising $15,000 to "create a new collection of original TEMPT1 artwork and merchandise using the EyeWriter 2.0 software, robotic technology, traditional print-making techniques, as well as his community of friends, fans and peers. Supporting this campaign will not only allow TEMPT1 to continue to make art and express his ideas, but it will give him a chance to again become a professional artist, independently support himself and his family, pay for his medical bills, and make a contribution to the contemporary art world."

]]>http://boingboing.net/2010/09/10/raising-money-for-pa.html/feed12Michael Franti's "The Sound of Sunshine" in sign languagehttp://boingboing.net/2010/09/10/michael-frantis-the.html
http://boingboing.net/2010/09/10/michael-frantis-the.html#commentsThu, 09 Sep 2010 21:06:46 +0000Video link. There's a whole genre of ASL (American Sign Language) music videos, exemplified perfectly by smokin' hot hottie-hot Jennie Batchelder in her fantastic interpretation of Michael Franti's "The Sound of Sunshine." Michael's had ASL interpreters at his shows for 11 years, so come check out more at the Power to the Peaceful Festival in San Francisco's Golden Gate Park on September 10-12, 2010.]]>

Video link. There's a whole genre of ASL (American Sign Language) music videos, exemplified perfectly by smokin' hot hottie-hot Jennie Batchelder in her fantastic interpretation of Michael Franti's "The Sound of Sunshine." Michael's had ASL interpreters at his shows for 11 years, so come check out more at the Power to the Peaceful Festival in San Francisco's Golden Gate Park on September 10-12, 2010.]]>

Susannah Breslin is a guestblogger on Boing Boing. She is a freelance journalist who blogs at Reverse Cowgirl and is at work on a novel set in the adult movie industry.

]]>

Susannah Breslin is a guestblogger on Boing Boing. She is a freelance journalist who blogs at Reverse Cowgirl and is at work on a novel set in the adult movie industry.

(Self-portrait by Sarah May Scott)

At Mayday Productions, blogger Sarah Scott writes about life with a spinal cord injury. Her writing is searingly honest, brutally revealing, and wickedly self-aware.

The after is where it really gets grand, gets epic, gets to where one memoir could never be enough. Truly epic shit doesn't start to go down until the very moment you decide to start living again, to start crawling your way back into the light and out of the darkness. I know enough to know now I'll never fully leave the darkness completely, but the reprieves at this point seem to be enough to keep me going for now. sometimes. But no one wants to hear about the after, because it doesn't arc as much as it shakes and shudders in fits and spurts until eventually you recognize an ersatz normalcy has filled the void you left somewhere in all the fallout.

I interviewed her for Boing Boing about life in a wheelchair, if she considers herself a cyborg, and her plans on becoming a female Hardiman.

SB: Tell me your story.

SS: The story that everyone wants to know from the start is why I use a wheelchair. I was 29, one minute racing my road bike, and the next "tits up in a ditch" and a paraplegic. That was nearly four years ago. Prior to that, I was your basic hot mess, but that's a longer story than there is room for here. I will say that PTSD has figured in for a longer time than I ever realized until I was injured. For once in my life, and this always sounds crazy, but after everything I've been through I actually like who I am for the first time in my life, chair and all.

I am a small-town girl from State College, PA, though I spent some time in NYC and Philadelphia before returning after my accident. These days I live in a very rural area with my crazy mutts.

SB: Are you a cyborg?

SS: I am not a cyborg, but I am getting closer and closer to being a terminator. My back is already full of titanium, and I've got a radio-controlled device in my abdomen that feeds medication into my spinal canal. If the trials go well, I hope to get my chance at being the female Hardiman with the ReWalk system. You can start calling me Ripley when that happens.

In a sense, being in a chair is like being a cyborg/object to a lot of people, somehow not quite human. I think all women know what it is to feel like an object to a certain degree, but I found it to be much different when you're viewed as a asexual woman and a person of very vague use if any. It made me very early on understand that to survive I was going to have to change how my self-worth was measured.

SB: Why do you blog?

SS: I started blogging for a few reasons. I was desperately lonely and going through all these sort of insane experiences that no one could understand, and I was desperate to be able to explain them in such a way that people would be able to understand without reverting to all the chair stereotypes that I was just a bitter, mean, crazy person now. There were a lot of people in my life that didn't make the transition to be able to see me first and the chair second, and it was heartbreaking. I thought online I could control things in such a way that people would see me again. In the beginning, it was very much about control.

As things have evolved, I started to ease up on that obsessive level of control and start showing the darkness too. It turned out to be hugely therapeutic for me, and I hope that it humanized me for a lot of people as well. More than anything, I want people to see me as a person and not as an object of pity or otherwise. My story is really about grief and catastrophic change, and I think most people at one time or another in their lives can relate to that.

Something that wasn't diagnosed early on was that I had a Traumatic Brain Injury during the accident, and my brain works a lot differently now. I can't remember shit, repeat myself constantly, fuck up words, and these creative floodgates opened up and haven't closed since. I see the world so differently, which I think is a big reason why I became so insanely drawn to photography and writing. I write and take pictures because I have to, it gives meaning to my life even if I forget from time to time that I have any.

SB: What do people not understand?

SS: Most people forget that I'm a very ordinary person living under extraordinary circumstances, and that I'm also incredibly shy to the point of near social phobia in some cases. The things that make healing the most difficult is all the shit I carried with me before the accident, things that become unavoidable after being catastrophically injured. I don't think I'll ever stop grieving, but I do know that everyday it gets a little less painful.

SB: If we could open you up and look inside, what would we find?

SS: Under all the armor, I'm someone who's been trying to survive one way or another my whole life, but never had a map or a guide to know how. My hope is that you'd find a lot of resilience and hopefully some beauty along with it. I like to think that I'm finally becoming on the outside the person who was hiding in there all along, but for many reasons wasn't able to be. I'm really, really hoping there's a photographer in there, but only time will tell.